Saturday, 22 March 2014


My shoulders hurt this morning. So does my neck. I am not sure why they are sore; perhaps it is something about the way I slept, except that they have been sore for several days. I would like to believe that this has nothing to do with ALS, yet somehow I cannot bring myself to that belief. I am suspicious of all things with respect to my body these days. I perceive everything through the lens of my illness.

In this case, the lens shows me a view of tiredness in the muscles in my shoulders and neck. I connect that tiredness with the same kind of tiredness I felt in my legs a couple of years back, and in my arms a couple of months back. It is the tiredness of overworked muscles trying too hard to do too much, even though what I do is the normal activity in life, the act of holding my head up straight.

To get a view of where this goes, take a look at Steven Hawking. There are a great many ALS patients who struggle to hold their head up, to look at the world on the level. It is a fairly common state of progression, to lose neck and shoulder muscles at some point. In some people it happens early, in some people it happens late. In some it never happens at all.

Then again, I may just be sore in my neck and shoulders. If I put on a rose coloured lens and look at this ache and stiffness, I can tell myself that it is just the pains of being my age, the ache of aging. I can look through this lens and believe that, with a few days rest, I will be better, that these aches will pass as so many other aches and pains pass.

In the end, it doesn't matter which lens I use. My body will do what it is going to do; my disease will do what it is going to do. I am simply a spectator, looking at this body and this disease from both the outside and the inside. I am not my disease; my body is just the place where it is happening. I am, in reality, the person holding the lens, the person deciding what colour to place in my view, what thought to hold on seeing through the lens. ALS is in control of my body; I am still in control of the lenses.

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